Muscle problems ALS, myositis

[Frosty632]

I am trying again never received a response.
I have a muscle/neurological disease still being tested to determine which.
I wont list the multitude of issues too many, but I am having weakness, twitching, vibrations in my legs and lately
when moving my left leg I get a sudden feeling of ICE on my thigh.
Has anyone else had this? Am I confusing the feeling with numbness, its gets instantly cold and feels very strange.
Any help would be appreciated.

Thanks

[enchantedblue67]

Girl, i didnt realize how young you are.. Me too i am going to be 42 in Feb and i feel older. i know you hurt but you have to exercise because the muscles tighten up so fast. even if you are in bed put your legs up and peddle like you are on a bike..i have gastro issues also.. I had a hmm let me see if i can spell it and remember what it was lol...laposcopic Nissen fundamental some **** where they took a herinia out from behind my stomach....boy did that stink.. they put five holes in me and went to work... now i have acid reflux again... yeaaaaaaaaaa not even two years ago...I see a RA also for my Fibromyagia which is painful and can keep you in bed for sure.. It is worse than the Neuromuscular disease. except when the nerves are inflammed boy they burn so bad... remember nerves burn and muscles hurt and aache like a bad tooth ache..i have insomnia also i am peri menopause which ***** the hot flashes are horrible i feel like ok ok enough is enough already.. you could have one thing wrong with you and the pain can cause depression and depression hurts everyone and everywhere... i have knee problems and shoulder problems and elbow problems carpal tunnel for the second time...it is due to the nerves are dying and they are slowly taking over me..I know some day i will be in a motor chair and i pray not yet...I have a lose screw in my lumbar fusion i had in 03 and it is sticking in my disc i was told a few nights ago so it is sending my sciatic nerve wild...and my muscles to get tight and sciatica hurts from my lower back to my feet and i am having problems walking or standing long...I need to find a neuro surgeon again...i wont go back to the one that did my surgery he is arragant.. Hey if you want email me at this name cox.net i dont care who gets it...we are both young and going through hell...Are you married? do you have kids? you should have a PET SCAN it does your whole body..i want to get one.. ask your dr about it.. maybe it can help you find the problem sooner...
what is going on with yoru heart and liver and lungs do you smoke? you are to young for this .... everything is wrong and no one found anything....that is bull....why lung scarring? Inflammatory diseasae hmmmm not sure of that one... well, i hope to hear from you soon god bless you

[Frosty632]

Yes I have been seeing a nuero, I have had blood tests and I had positive readings for a muscle disease, my EMG came back as issue with the leg muscles.
I had so many tests I can't remeber them all
They just cured my severe vertigo with training thats a nice feeling not to be dizzy.
I just had a three day EEG because there were problems there also. I had a cat scan that showed enlarged heart, liver damage and lung scarring which I know is consistent with an inflammatory type disease. I was also sent to a rheumatologist because of ANA levels. I have a multitude of issues migraines, shortness of breathe, swelling, numbness and tingling of the legs, face and hands, insomnia, joint pain, Gastro issues, weakness, muscle fatigue when exerting myself, all the a typical symptoms but I know they need to do a lot of tests to make sure what this could be. I am a 43 year old living in a 90 year old body.
They are going to an MRI of my spine in the next week.
They have been testing me since July and it is long road.
I have more weakness and aching,  knee pain its the whole leg and doesn't radiate.
the coldness feeling is just so bizarre, I guess maybe it is numbness but it feels so strange

[enchantedblue67]

i am sorry to hear of your problems.. I know the feeling of pain... well a neurologist usuallly deals with nerves... are you having a genetic testing to find out if you have a neuromuscular disease???? HOw long ago did you have it...i know it takes a month for results....which stinks...they took blood work right?? vibrations hmmmm cold..... could been numbness ..where does the pain radiate down your leg into the feet? what is making them test you for neuropathy did you have an EMG done yet? Let me know ok